Crazyness

So my post Friday morning generated a pretty good discussion on facebook.  I want to share some of that here.

First, its tremendously important to me to make sure that I remember Dominic preregression, and that gets harder and harder the further away we get.  So I am so blessed when the people who were around in our lives then post their memories of that time too  (the ones who’ve stayed, who haven’t been so freaked out by his regression that they aren’t around anymore – but that’s another topic for another day).  And there were a good number of those posted yesterday.  Here’s my favorite, because it reminds me that I’m not crazy. I didn’t “miss” a developmental delay, I wasn’t in Denial.   It really was a huge, almost overnight, shift.  And that’s hard to communicate to new people / teachers / therapists in our lives 5 years later.

I remember too well. Every time I wind yarn, I have to choke tears. I will never forget Dom at my kitchen counter in lock step with . Going across the street to the playground just in time in the evenings to watch the sky turn pink while they had races on the slide. was afraid of the big slide so she always tried to convince him to go on the smaller tandem slide, but he had none of that and made her do the big one. Being fascinated with that stupid shoelace, so I pulled out the swift and ball winder for him to wind yarn over and over while he questioned me about it. He was a crazy dolphin in the water, and I was a little jealous of his fearlessness compared to my meek (at the time) little girl when we played.

And I remember seeing you at Costco about a month later. We had talked on the phone and I thought someone (the teacher, you???) had a screw loose. That kid was fine! He had no trouble looking me in the eye. He asked great questions, made great observations, and we had conversations at length. He played with my kid. Normal for a goofy three year-old. What do you mean "He's not making eye contact?!?" Someone had to be confused. Then I saw him in the baby seat of the shopping cart that day. He buried into your armpit and moaned. He was afraid of me (or that's what I interpreted in the moment). He had no words. And you shrugged at me and said, "See?" One of the scariest moments of my life, and I won't ever forget

That’s the story that needs to be remembered. He was FINE.  And then, He wasn’t.

But then, a most interesting thing happened… these things were posted…

(childs name) regressed at age 5, my second child, but the last of my 3 on the spectrum to go, preceded by child # 3, and child #4. My friend’ daughter was in middle school. (name)’s son was 7 1/2. You will get him back. I will get all 3 of mine back. and every day will be an FUA day!!

And

“Just because a child narrowly made it through, doesn't mean it's automatically all sunshine and roses later. There is always a chance that the straw will eventually break the camel's back. Elizabeth Wray, who is still locked up at BCH, regressed at, I wanna say almost 16...February last year, developing PANDAS 6 months following a DTaP. The hospital subsequently had CPS remove the parents' rights, took her off antibiotics and GFCF diet, even though she had been on them under a doctor's care, and put on a slew of psych meds instead, where she still is today”

And

“The flu thing sounds just like my son. He was 11. He got really sick and then woke up a few mornings later with extreme OCD that was a living hell for 5 years. Thankfully he didn't regress into Autism, but, my gosh how can such things happen? Thankfully I never took him to a doctor, I just was too afraid of a horror story happening like the mentioned Elizabeth Wray.”

I know I’m not alone with a child who regressed later than infancy, but its really scary to know how late in a childs development that its happening.  5?  7?  11??  16?!?  Is any child really safe?  Is there ever a point where parents can exhale because their kid is definitely going to make it to adult hood with all cognition in place??

Where is the outstanding sense of urgency to find out why this is happening to healthy children???  Where is the media?  What is going on?????